The Rewards of Mainstreaming Disability Education

Check out this article in today's Wall Street Journal for a story about how a high school succeeded in bringing people with disabilities into the mainstream. Also see here for a special online feature they've published about the same topic.

What I find compelling about this story, especially in light of some comments on an earlier post, is how success was defined in this story. The quick summary of the article is that by including students with disabilities in regular classes, they were empowered to believe that they could succeed. One particular student tried hard but did not pass the required state tests. He was still able to achieve his dream working for the army, if only as a truck driver on base. He is now on a path to his goal of being a combat infantryman or a paratrooper, if he works hard and proves himself.

"Adam says [his high school] educators made him feel his disabilities didn't resign him to isolation or failure. 'Even though I am just a truck driver, I am proud of what I do and what I've become,' he says. 'I believe deep down inside that I have succeeded already.'"

Disabilities in the Media: The next act

As I have written more and more about disabilities on this blog, I have discovered that my thoughts have revolved mostly around how it is covered in mainstream media. For me as an able bodied person, media is the most noticeable place that I see frustrating ideological portrayals of peoples with disabilities.

Separately, I learn from the blogs of other activists how much distress there is about how the able bodied population in the world doesn’t understand peoples with disabilities, and I couldn’t agree more.

The reason I mention these two things together is because I see how pivotal media is to cultural education of the population. For example, I think that the TV show Will and Grace had a very significant impact on how gay men are understood in the general American culture. The show portrayed the character Will as a successful, smart lawyer who was looking for a long term relationship. In many ways that was contrary to the stereotypical gay man. I believe that this portrayal improved the way most Americans understood gay people because they were exposed to a more positive and more realistic example.

Likewise I see that there is great potential for “good” portrayals of peoples with disabilities to affect the way Americans understand the group. I would define “good” here to mean some character that is able to connect with viewers without the barrier of the disability getting between them. As I have posted before, this idea is similar to how The Color Purple erases the barrier of race between the characters and the viewers through a compelling and human storyline.

So while activists should continue to lobby for reforms in government and in their communities, I think it is also imperative for the disability movement that we use media more effectively to teach the population what we want them to understand, that peoples with disabilities are every bit as flawed, dignified, relevant, human, beautiful, funny, dorky, and capable of contributing to the world as anyone.

The Limited Connotations of Metaphorical Blindness

In this post at Disability Culture Watch, Simi brings the unfortunate negative connotations of metaphorical blindness.

"Definitions of the word “blind” found in my computer’s Thesaurus support the idea that blindness limits . The terms ignorant, imperceptive, insensitive, irrational, oblivious, obtuse, random, rash, stagger, unaware, unconscious, uncontrolled, unknowing, unplanned and violent came up on my screen. My Roget’s Thesaurus also provided inattentive and purposeless. These meanings lurk under the surface when the word “blind” is used whether on its own, or in pairings, in such phrases as “blind passion”, “blind rage”, “blind justice”, “blind drunk” and “blind faith”."

Only recently, having read Planet of the Blind, do I now understand how unfortunate this seems. These definitions and based on an sighted perspective of how limiting blindness is. But I've come to understand that blindness is beautiful because of how it plays on the imagination and can paint a unique picture of the world.

Think of the beautiful moments created when sighted people have their eyes closed...

-The moments before sleep
-A kiss
-Eating somthing truely delicious
-Listening to beautiful music
-In prayer

When I have had these "blind" experiences, I was in a heightened state, grasping something that sight interfered with. The blindness freed me in those moments from the terrestrial world and let me experience another world.

Think now of how beautifully "blind" could be used metaphorically if we had this connotation in our language.

"She blinded me with her beauty."
"I was blind to my earthly cares."
"The music blinded me into a new realm."
"I was blindingly impressed by that play."

In this example, it should be easy to see how clearly society's negative views of disability permeate our lives. A seemingly innocuous word connotation reveals a blatantly narrow understanding of blindness, even though every person has the capacity to appreciate the beauty of not seeing in a kiss, prayer, etc. Thanks Simi for bringing up the subject and opening up the beautiful metaphors that await me.

Uncourageous #1: "New approach to banking for physically disabled"

I have been talking a lot about how poorly peoples with disabilities are covered in media, so I wanted to offer this story as an example of how coverage can be better. Firstly this story isn't at all "inspirational". It doesn't trumpet the person's valor for accomplishing so much even though he has a disability. Rather it quickly moves beyond the characteristics of the person and describes his many successful ventures including a practical and marketable new one to create an online bank especially designed for people with physical disabilities. Why would he do this... not because of the poor people in wheelchairs who can't reach the teller (although it will help them), but because its marketable. What a concept, that you don't have to be purely altruistic to positively affect the disability community. You can help people and be profitable by providing a service that people value! Thanks to Crains Chicago Business for reporting this story in a very "Uncourageous" way.

"Since being diagnosed with multiple sclerosis 16 years ago, Brad Saul has learned there's opportunity in marketing to people like himself. He's established a non-profit that trains the disabled for radio industry jobs and has started a local handicapped-accessible transit service. Now comes his latest and most ambitious idea: Mr. Saul, president of Chicago radio syndicator Matrix Media, is launching a bank catering to disabled people. First Access Bank will operate online only and be compatible with the types of software used by people with vision or hearing disabilities. Mr. Saul, 47, has recruited a New York company that specializes in bank startups, NuBank Group, to manage the financial and regulatory aspects of the enterprise. The bank's application hasn't yet been submitted to regulators, but the organizers intend to open in about a month as a finance company, with deposit and other banking services provided by Town Center Bank in south suburban Frankfort, also a recent NuBank startup. They hope to have approval for the bank itself in early 2009 and will need to raise between $1.8 million and $2.4 million to capitalize it, says NuBank President Dan Hudson. Mr. Saul says First Access will fill a real need. "There's not a single bank in this country — not one — that has an accessible Web site" for all kinds of disabled people, he says. His online bank will permit customers to pay their bills electronically, avoiding the need to write checks and mail bills. It has been very challenging for me, and I rely on my wife to pay the bills and write the checks," Mr. Saul says. In addition, the bank will give customers free access to ATMs, paying the fees charged by other banks itself. One banker agrees that the market for the physically disabled is not adequately served. "There is, I think, some need for it," says Tommy FitzGibbon, executive vice-president at Chicago-based MB Financial Inc. and head of the bank's community development unit. "The issue is, how do you define the need? And how do you get the word out?" Mr. Saul, whose marketing plans include working with non-profit advocacy groups to promote First Access, hopes his efforts will help empower people who can be vulnerable to predators. NuBank initially was skeptical of Mr. Saul's idea, which had been rejected by other banks big and small, Mr. Hudson says. NuBank itself turns down about a third of the proposals it gets, he says. But research into the disabled market convinced him otherwise. He started by visiting bank branches in Chicago and observing. "I asked myself, where are the disabled people in the lobby?" he says. "Why aren't they here?" His conclusion: Banks aren't set up to provide service to the disabled, whether they're blind, deaf or in a wheelchair." -Crains Chicago Business 11/12/07

So Courageous! Disability in the Media: Act 5 Media Manipulation

We last left the “So, Courageous!” argument between the spider and the fly with the spider about to critique the portrayal of peoples with disabilities in the media. Let’s resume:

“Fly, you said you found stories of the disabled in the media truly inspirational, but I think that the media takes advantage of the disabled to sell stories of hope. These are not genuine portrayals of peoples’ lives but rather are personal events edited into a feel-good paradigm. For instance, if this little Russian orphan with no legs can get a black belt in Karate, think of what you the audience could accomplish. There is nothing wrong with hopeful messages. Hope is a wonderful thing, but when the majority of stories about peoples with disabilities happen to fit this paradigm, I grow suspicious. Maybe these are not just random occurrences but a systematic and detrimental manipulation of peoples with disabilities in media.” Said the Spider to the Fly.

“But Spider, media presents many hopeful stories, not just about peoples with disabilities. If people felt these were distasteful, they would speak up, or not desire the programming." Said the Fly to the Spider.

“That's true Fly, and personally I find just about all these hope-filled stories distasteful. They feel like inspirational candy that is overly sweet to the taste, leaving me with a fleeting enjoyment as I ingest it followed by a predictable pain in my stomach and regret for having succumbed to the temptation. Many human stories in today’s world of fast paced media tend to be abbreviated to an artificial level so that they no longer seem genuine, but rather become a tool to sell a newspaper or advertising space. Hope sells because we all want to believe great things can happen, and these stories often reinforce that sense. Peoples with disabilities are a target to fill such stories because the dramatic and unusual challenges they face make their individual achievements even more inspiring. The able bodied population apparently finds nothing wrong when peoples with disabilities are constantly presented as a the final hope inspiring act to close out the 5 o'clock news. The population must be educated to see how limited their experience is of the disabled, and to demand a more respectful way of representing these people in their community. So to address your thoughts fly, that the media present genuine inspirational stories, I say, at what cost? How many peoples’ stories are being manipulated and edited to fit this pattern? Why aren’t other stories of disability being shown?" Said the Spider to the Fly.

Penny for your thoughts...

... well not really, but I would like your thoughts.

I am thankful that you’ve found this blog and find it interesting enough to return every now and then. You are all people who’ve encountered disabilities in your day to day lives. Some of you even write your own blogs about disabilities and have strong opinions on the topic. I see this blog as unique in the disability blogosphere because it attempts to facilitate discussion between different points of view; however few of you have offered your own opinions as comments here on Abled. Please take a moment to post your own thoughts and contribute to the discussion. The best way for me to ferret out the subtleties of these complex human issues is to listen to your frank gut reactions. I can’t do it without you and I have so much to learn. Thanks for your continued support.

Testimonial of the Day #3

From Miss Crip Chick, an awesome poem on Ifs, also the subject of a new blog carnival:

I’ve never known how to embrace If
Funny since I was born an idealist
& Never have been one of those practicing realists
Maybe this no-ifs-policy is a defense mech’
‘Cause once If gets started,
It becomes a running faucet of unanswerable questions.
Like what if I wasn’t disabled?
Maybe I’d be rich;
after all, I wouldn’t have to stay under the poverty level
in order to keep insurance that would cover my home health nurses
Maybe I’d go to a nice school in Washington…
but I’m not sure I’d be interested in politics
if it didn’t affect me as much
So is that even a fair question to ask?
I am disabled just like I’m female
Just like I’m queer
Just like I’m Korean
Just like I’m 20 years old
There are no ifs about it.
Yet non-disabled people enjoy summing this up as not having “hope”
(that’s their reasoning for why a lot of us are anti-stem cell)
But the thing is…
I have hope– lots of it.
Hope for a community that actually recognizes it’s a community
Hope for an end to my current state of unhappiness
Hope for justice, pride, solidarity.
I just don’t waste my hope on silly things
Like wishing I could walk again.

Testimonial of the Day #2

Take a look a this post from David over at Growing up with a Disability: Milemarker-Mania

"One often hears that life is a journey, and that the goal is not to race to the “finish line”, but rather to embrace the whole trip. Yet, when you are a child growing up with a disability, many people, particularly educators and health care providers, focus solely on your milemarkers, as though the milemarkers and the journey are one and the same. Gross motor skills, fine motor skills, speech and language abilities, cognitive skills, academic level, activities of daily living skills, social skills and on and on - it is easy to become consumed with measuring progress against these markers, and take them on as though they were life itself."

David challenges all of us to have the same expectations of him as we do of ourselves: that we have a rich, meaningful, and impassioned life, full of dreams and ambitions. A disability does nothing to change that.

So Courageous! Disability in the Media: Act 4 The Fly and the Spider

The ‘So Courageous’ Phenomenon (SCP), in which peoples with disabilities are praised and appreciated for their accomplishments more than their able bodied peers, is a complex issue. The phenomenon is present in daily interactions between peoples with disabilities and the able bodied. It is also a common way of portraying disability in the media. Many SCP events provide fodder for the harangues of disability bloggers, yet the able bodied population who sponsors the SCP seem undeterred to their critiques. I wanted to explore the issue more thoughtfully and present the reasonable ideas that result in declaring some people with disabilities “Inspirations to us all…” etc. as well as the reasonable ideas for why that is a harmful sentiment.
To begin our discussion, let’s take the perspective of the common able bodied person (The Fly in our example) on portraying peoples with disability in the media. Then we will see-saw back to the activist perspective (The Spider) and so forth. Please add your own comments to continue the discussion!

‘It is admirable that with a greater number of challenges in life, peoples with disabilities have been able to achieve great things. When we give them positive attention for these accomplishments, it is to recognize their extraordinary effort and remarkable determination. They should be honored for these accomplishments. Media coverage of these moments also helps support a more positive social outlook on disabilities instead of focusing on negative results of limitations.’ Said the Fly to the Spider.

‘I disagree. Most media portrayals of peoples with disabilities are distasteful because their appreciative angle is usually rooted in a hidden foundation of pity. Society has had low expectations of peoples with disabilities because they pity their condition and find it inherently “deficient”. The only reason the media finds it worthy to celebrate these people is because everyone is surprised that someone with such “disadvantages” has been able to achieve what normal people can. Because this “positive” sentiment stems from a very pitiful perception of the disabled, I find it unappealing. People should be educated to get beyond this simplistic and harmful view.’ Said the Spider to the Fly.

‘I don’t think I pity the disabled? I find them truly inspirational. I find the stories I read in the media compelling because of the hopeful tales of success. Take for instance this story of a kid who became a black belt in Karate even though he doesn’t have any legs. That is acceptably inspirational. It is an amazing story about a kid who did remarkable things even though he had remarkable impediments to success. There’s nothing wrong with being inspired by the true stories of others.’ Said the Fly to the Spider.

‘Ah, that’s just because of how the media packages the stories of the disabled…’ Said the Spider to the Fly.

See next week’s post for Spider’s thoughts on the media and the conclusion of this discussion.

So Courageous! Disability in the Media: Act 3 The "UnCourageous"

I've posted before about the So Courageous Phenomenon (Act 1) and have given some media examples where it occurs (in Act 2). As an antidote, I wanted to show some instances of disability coverage by the media that I am more comfortable with because it is not rooted in pity.

This music video by the band Sigur Ros (one of my favorites) features people with Down Syndrome. I find it beautiful. Unlike the examples above, it does not present on these people in a manufactured positive light. It just features them and lets them be who they are… in angel costumes.

I think this story about a boy in a wheelchair getting attached accidentally to the front of a truck and being driven several miles unharmed, is powerful more for the Wow! factor, than for celebrating anything the boy accomplished. We’re all just glad he survived, and awestruck at what a ride that must have been.

I’ve blogged before about the Color Purple but I want to point it out in this context even though it isn't about disability. This story of entirely African American characters set in the post civil war south does not at all invoke overcoming the plight of slavery. Its power comes from presenting sincerely courageous characters who impress us due to the humanity of their lives, not the context of their situation. By refusing to enter that politically charged issue, the story is much stronger and relates to all people.

I heard a lot about Heather Mills being on dancing with the stars with her prosthetic leg. When I went to research it I was sure that the judging would be sappy and awful. Surprisingly, they did not really play up the SCP in this clip. They addressed her disability, but she didn’t get too much praise just because of it. She even got some honest criticism based on her disability. This may have been an isolated case however in the Heather Mills Dancing with the stars saga. The other shows after this one and the media coverage surrounding it seem more and more "Courageous".

As the least courageous (and hopefully not tasteless) bit I’ve found, here’s an interpretation of the previous video with what could have happened to Heather Mills…

So Courageous! Disability in the Media: Act 2 Exhibits

Here I present some instances where the So Courageous phenomenon (SCP) is exhibited in the media. These stories are packaged in such a way to deliver a hopeful message of success about people with disabilities. I summarize the basic storyline of all these pieces as “Despite the disadvantages they were born with, this inspiring person has achieved great success.” The stories are built on the underlying assumption of very low expectations for the disabled person (what I would call pity). This initial feeling then provides the basis for extolling their accomplishments, which if not for their disability, wouldn’t be so remarkable or newsworthy.

I should be clear that I find absolutely no fault with the people in these stories. The bone I'm picking is with the media coverage and the public reactions it elicits.

“Courageous”
Josh Blue is a comedian who competed on Last Comic Standing who also has Cerebral Palsy. He is very funny and very cool. I just get a weird vibe from the crowd. Their standing ovations seem based on the So Courageous mentality, celebrating him on what he has achieved relative to his condition. Josh wisely plays this to his advantage, part of why he is so successful.

Coverage of Aimee Mullins, an actress, model, and runner who has two prosthetic legs has definitely played up how amazing her achievements are… considering that she doesn’t have any legs. Are they wrong? No… but the tone is still rooted in low expectations and pity for not having legs. Read a deeper analysis here from The Gimp Parade.

But what about the children! They are used probably most often as courageous inspirations in news media. In this example one boy is the star on his football team even though one of his arms is underdeveloped. Not inspired yet? How about this one of a boy who has obtained a black belt in karate even though he has two prosthetic legs.

Well if you’re still not weeping for the hope-filed visions these stories have painted, time to bring out the big guns. Christopher Reeve is the king of SCP. Just read this inspirational biography of him. What’s more is that media didn’t have to create this story, Reeve did it himself and used his inspirational pull with people to fund-raise for a “cure”. Here’s a great South Park parody of him (highly offensive).

In that same south park episode, Timmy and Jimmy are presented in a decidedly "UnCourageous" way. Stay tuned for more on that...

Does this give you a sense for what I mean by the So Courageous Phenomenon?

So Courageous! Disability in the Media: Act 1 Introduction

Wow, they beat the odds, they overcame adversity, they’re an inspiration to us all. They’re so courageous!

This is the usual positive way peoples with disabilities are portrayed in the media. The most prominent example is Christopher Reeve who the able bodied population admired because of his determined struggle to overcome his paralysis. But stories like his are commonly played in local news programs, magazines, or in TV shows.

Judging from how often such stories air, I must conclude that people like seeing them. Certainly no one seems to be complaining. I can understand their appeal. They offer a compelling narrative that viewers want to hear because it affirms their own struggles and shows that even the most difficult goals can be achieved. The narrative is often presented as a story of challenge, struggle, and unlikely success.

I gather from my own experience and from that of other disability bloggers that the “So Courageous” spirit exemplified in these stories is also a little troublesome and not as innocent as media would have us believe. In this series I will present multiple examples of this phenomena in order to winnow out the issues that are present in what has become the definitive “positive” presentation of disabilities in our culture.

For a little background about my “So Courageous!” terminology, check out this South Park episode when you have 20 minutes to kill. In this episode, the children of South Park are spurned by their parents for their intolerance of their gay schoolteacher’s outrageous behavior. The parents give the teacher an award for being “so courageous” in the face of their children’s discrimination, only to realize later that his behavior was actually inappropriate. Note that this episode may be offensive to some viewers, although I just think it’s hilarious.

Stay tuned for Act 2 where I'll explore the issues surrounding this topic.

Testimonial of the Day

In this series I present descriptions of the lives of peoples with disabilities to celebrate their unique perspective on the world so that it can enrich the lives of all.

Below is an excerpt of a speech that Steven Kuusisto delivered in New York. Read the whole text here.

I became fascinated with this author after reading his book, Planet of the Blind. He writes beautifully about his experiences and this won’t be the last that I post on this blog.

“Not very long ago I heard a boy jumping on discarded bedsprings on a Chicago sidewalk.

He was making a stripped down music from solitude and trash. It was the song of a woodcutter’s axe in the empty woods. He saw me listening. He noticed my guide dog. He sensed an audience. He threw everything he had into making rare music with ruined steel coils and shoes. He was releasing invisible spirits into the morning air of Wabash Avenue. The music grew out of his blood. I’m guessing that if you’re a sighted person you’d have driven right on by. Or maybe you’d have crossed to the other side of the street if you had been walking there. But I heard the maddened dancing for five full minutes before moving on.

**

At first I thought the effect was obscene. He was simply calling out the furtive and metallic protests of forgotten trysts. I thought of a bordello in the wild west.

I laughed at the salty bravado of the performance. Then I saw flashes of light. The coils were rising and compressing in timed measures. My blind eyes could just make out the glint of his instruments. In turn I began to listen to what this dancer was really doing. The broken springs flashed like the undersides of leaves. I was like a sailor on a distant ship. I could see the maritime flash of his lantern. In turn I saw that his bed springs were tuned in harmony with the sky and the local trees. The dancer was saying all kinds of things. His feet were rattling and whistling. I’d never heard anything like this before.

The dancer was offering his ragged memories to the damp air of the street. I saw the sparks and heard the 16^th notes; the 8^th notes; the sparks of his dance dropped like stones from a bridge…

**

I was feeling lucky just then, alone with my guide dog, the two of us having been on an ordinary walk. A gold leaf was spinning down. A red maple leaf was floating on water. Flashes of sun ran across the June river. The dancer’s shoulders and hips dipped and high notes leapt all around him. He was dancing at the epicenter of the early light—that overcast sun that always hangs in the mornings above Lake Michigan.

Then he was in an island of trees. Low notes came suddenly, the notes were signifying a bent path.

The way forward was harder for some reason. The dance had taken a darker turn.

I could tell this was now a steep narrative. Somehow he’d figured out how to make the springs sound like a tuba. Then he made the metal groan like a cello. And then hammers were flying. Again there were sparks of light from the bed.

The high notes came like whale songs from some migratory coast. For a moment I thought about Marsilio Ficino, the Renaissance man of letters who remarked that "beauty is just shapes and sounds". Hearing the Chicago dancer move across the secret world of a homemade dance—a "found" dance—I thought that Ficino left out the weird and lovely human and animal volition that lives behind the shapes and sounds. I also realized again much as I did when I was a boy that when you stand still you can hear the unexpected music and sense the light that comes from living and walking in shadows.”

More than Different

In my post earlier about the mayor of San Diego supporting gay marriage, I made the connection between sexuality and disability, that these are two groups being treated unjustly because of their difference from the mainstream. The point of the post was to illustrate the power of an elected official seeing beyond the difference in his constituents and supporting equal justice for all.

After a discussion with a reader, I wanted to air the opinion, that disabilities are not just a difference.

Rather what makes disabilities unique is that it is a limiting difference: Some characteristic about a person that renders them outside the norm of generally accepted and expected (tongue-twister) ability.

I’d be curious to hear from readers with disabilities to see what they think about this distinction. My expectation is that most readers would be proud to be more than just different. Thoughts?

Defective - Animation

A different perspective on prostheses. Not a whole lot of thought behind this one but I thought it was funny.

Standing up for difference

This heartfelt defense of gay marriage speaks to the desire for justice and equality that is also present in the disability community. As a gay man who has found a life long partner, I couldn't resist using this forum to share this touching testament.

"I just couldn't bring myself to tell an entire group of people in our community they are less important, less worthy, or less deserving of the rights and responsibilities of marriage than anyone else, simply because of their sexual orientation."

In the end, when I speak about disabilities on this blog, I speak about difference. The reason I feel somewhat justified in publishing my thoughts is because I think I understand difference because I am gay and because I want to understand members of the disability community. I think that once you have crossed the line into being a minority or a member of a marginalized group, you have a fair understanding of part of what other marginalized people feel.

Thank you Mayor Sanders for your courage to search and speak your heart.

Book Review: Planet of the Blind

I should start out by saying that I'm not a big reader. Its always hit or miss with me on a book. Planet of the Blind by Stephen Kuusisto was definitely a hit. From the first chapters I was really engaged in literally a whole new world. Other books have done this by creating a fantasy landscape but this book paints a beautiful picture of the real world that the author, who is blind, experiences every day.

The eloquent and artful language and the deeply personal and even intimate stories really drew me into this world. My imagination did the rest to immerse me not in the visual pictures of what the author sees (although they sound beautiful) but in a feeling that was very new and exciting, something having to do with the totally out of control experience of "conquer[ing] space by hurtling through it," with only shadows and colors to guide him. What a fantastic feeling this evoked in me.

What I liked most about the book, beyond the way it played with my imagination, was the epic character arc that it unexpectedly crafted. We are graciously permitted to journey through the most private moments of Mr. Kuusisto's life as he struggles with his blindness and grows into accepting it. It is perhaps the most important strength about this book because it delivers a universal message of becoming and discovering who one really is. Just as a person with a disabilities is first and foremost a person, so did this book epitomize that by delivering a basic human story of self discovery and understanding with blindness providing the colorful accents. The story is in the end perhaps the most human of all stories and one that we all have the capacity to understand.

This book also gave me a great education in blindness. By not "teaching" blindness directly, I was able to learn as things came up in the story, but could always keep them in the context of a the author's life. I did not know that there were different types of blindness, or that there could be pain associated with it. I always thought it was just a peaceful darkness. I feel now like I've been given tools to understand blind people that I see in the world around me. Because of the book, I can make informed assumptions about them to plug my curiosity. Sure, the assumptions might not be true, as few of the assumptions we make about people are, however assumptions do make people in the world less scary and less intimidating. I think this stems from being most afraid of what we don't know, and to most able bodied people, disabilities are totally unknown. This book is a great step towards fixing that.

This is a great read on many levels, as beautiful prose, as compelling narrative, and as informative and "good" education. I highly recommend it.

A wheelchair...!!! AHHHHHHH

I think I've finally hit the core reason peoples with disabilities are marginalized. They're different. The able bodied see a wheelchair and can't comprehend a life like that. It feels so totally different from their own ambulatory life, and their mind may unconsciously drift to all the incongruities of a life in the seated position. But they don't have any facts or experience to base their thoughts on.

We are afraid of what we don't know. But that fear makes it more difficult to learn because we avoid that which we fear. So the able bodied shun the person with a disability because of his difference and they don't form a genuine relationship.

This is why disability education is so important, but how do you do it well? It is a challenge to educate on this topic without on the one hand forcing fake affection for the disabled (usually based in pity) or on the other teaching only about the difficulties of a disabled life. The goal must be to educate enough to break down the barriers of fear so that genuine relationships can be built between peoples with disabilities and the able bodied.

Is it really this simple? Solving it is the hard part.

Look Ma, No Arms

I made a post recently, wondering how you reacted to a video showing a man in a wheelchair struggle to cook a frozen pizza. In a comment on that post, a reader passed along this clip of a Chinese woman who has no arms doing common household tasks. How do you feel about this one? I vote for Amazed. She adapted to her situation by training her feet to perform very fine motor skills. Pretty interesting to see the Chinese woman video pared with the pizza video. It makes me think about why these films were made and what messages they were trying to convey (it would help if I could understand the Chinese!). One highlights frustrating struggle while the other emphasizes brilliant successes. Two very different disability perspectives. Thanks a lot for passing this along reader!

Blogging Against the Telethon

A blogswarm was organized over Labor Day to protest Jerry Lewis’ Telethon. While I did not personally participate in this protest, I am very interested to be observing. Theoretically, I can understand how the telethon is using childrens’ disabilities as a means to provoke pity and subsequently donations to the Muscular Dystrophy Association. I can also see that this is done to help children with MD and is probably done with the best intentions. Jerry Lewis clearly thinks he’s doing a good thing, while the disability bloggers couldn’t be more outspoken against him. In a first this year, bloggers got together around this issue to share their opinions. For them, this telethon is the perfect representation of the different understandings of society should approach disability. For a phenomenal list or responses and links to other great disability blogs, check out Kara Sheridan's recap here. I wanted to pull out a few nuggets of argument that I found amongst all these that help clarify to the able bodied person why this telethon is a problem.

A post from Iron Jawed Angel presents a great summary of the opposition to the telethon:

“Jerry Lewis's MDA telethon hurts people with disabilities. First, it perpetuates the myth that living life with a disability is a monumental tragedy. And that it is somehow a life without dignity or joy. Both could not be further from the truth. What is presented on the telethon is an able bodied person's idea of what it would be like to be disabled. The heartwrenching video clips that are put together are done in the most paternalistic, ablist light possible. There is never any credence given to the fact that maybe it's society itself, and not just the people with disabilities, that need to change. Apparently, no one who takes part in the telethon ever stops to consider that they are committing cultural genocide.”

I think that by cultural genocide she means that this telethon reinforces ideas that disabilities are awful, should not exist, and must be cured. A similar uproar developed over Christopher Reeve’s determination to cure his disability instead of live into it. By narrowly emphasizing the need for a cure, the telethon rejects and actively seeks to extinguish a whole culture of strength and beauty that exists in the disability community.

The telethon is structured to provoke pity for suffering children and to convert it into donations. 21 year old David over at Growing up with a Disability posted some well composed thoughts on the destructiveness of pity. Here are some highlights:

“1. Pity [fosters] negativity. The negative aspects of the condition are emphasized and magnified, rather then the positive aspects and enormous potential of the individual's life. Instead of focusing on what a person can do by embracing all their strengths and gifts, pity limits a person.

6. Pity towards people with disabilities gives society the false impression that disability and happiness cannot coexist. That isn’t necessarily true, and that simply serves to cause more pity.

7. Another problem with charity for pity is that it can give the impression that once the charitable act has been done, societal responsibilities are finished...”

And finally, here is a great picture that sums it all up from Asperger Square 8.



Only a few great thoughts here on a really immense topic that epitomizes the struggle that people with disabilities have with the able bodied. Each side has a perspective that they feel is not only justifiable but morally motivated. Jerry Lewis feels so strongly about the issue that he has surely worked tirelessly to raise funds for a cure. And he is so sure in his perspective that he has said with conviction, "...if people in wheelchairs don't want to be pitied then they shouldn't leave their houses." There is a lot of work to do.

Trying to Fix a Disability

There has been a bunch in the news recently about Autism. I learned here that researchers at the University of Illinois in Chicago will be focusing their efforts on finding the cause. This made me curious though. With many physical disabilities, I've learned that people don't think of them as things to be fixed but just the way they are. I would even venture to say that part of the definition of "Disability" is a condition that persists over time, not something temporary. Is Autism different? What is the general belief about Autism, that it should be fixed or that it's something to live with? I would definitely agree that regardless, it is a good thing to research a cause so that Autism can be prevented in the future perhaps.

I would imagine however that it causes mixed feelings for someone with autism to support preventing a condition which is a very big part of their own life. How does a person with Autism or with any disability for that matter, feel at peace with their abilities while at the same time working to make sure that their condition does not befall others? Can any readers provide some insight?

Who's Afraid of the Big Bad Myo Electric Arm?

Check out this post over on Bums & Bellybuttons:
"Why is a wheelchair scarier than fat or black skin? Why is it worse? WHY HAS NO ONE WRITTEN A MUSICAL ABOUT IT???? " Great question... What do you all think?
Like it or not, it does seem to be true. Off the top of my head, I'd say that a person in a wheelchair is scarier than fat people, black people etc because far fewer people have any experience with someone in a wheelchair. Even if you don't know people of other races, you see them on TV, on the street... People with disabilities on the other hand are more hidden from view. We are afraid of what we don't know, and that is why there won't be a musical about people with disabilities until the world gets some good solid exposure to them.

Context for Disability Videos

A few years ago I spent some time working on a program to teach kids about disabilities. One of the things that has stayed with me the most was a lesson we learned from educators: be wary of teaching about disabilities through experiential tactics. When you blind-fold a kid and tell them to walk around, they learn that it is really hard to be blind. But those short lessons mostly reinforce the negative thoughts we have about the disabled, how life is much harder, more difficult, maybe even pitiful. While it is good to learn that disabilities make life harder in many respects, that is an incomplete lesson. People with disabilities learn new ways to interact with the world, and I doubt that those lessons can be taught without necessity.

I say all these things to give some context to video posts about people with disabilities such as the one I recently posted here about Frozen Pizza and this one about going grocery shopping. I believe that these films were made to illustrate that having a disability makes simple things in life very laborious. That is true, and it's hard not to get that impression from these films.

But an initial able bodied perspective of these videos may be incomplete. For the people in these films, this is their way of life. They have adjusted to use the abilities thy have. I'd be willing to go out on a limb and say that their lives are not all pain and difficulty. While that may not be the lesson the videos are trying to teach, it is an important thing to keep in mind.

Pizza Poll

Also referenced on Wheelie Catholic is a video of a man in a wheelchair making a frozen pizza. I think this is a really interesting video just because of all the ways we could react to it. As a quick poll, watch the video and post a comment of how you reacted to it.

A) Felt bad for the man because it was so hard for him to make the pizza.
B) Thought it was cool to see the tricks and devices he used to accomplish his goal.
C) Was interested to watch a disabled person for such a long time.
D) Was frustrated with his difficulties.
E) Thought he should have made a simpler meal.
F) Other, write you own thoughts!

Reflection on the blog

I guess, after writing a couple posts on this blog, I'm finally figuring out what it's about: talking about disabilities in a way that the able bodied don't often hear. This talk is of course very common within the disability community, but from my experience, it doesn't often get out.

Here is a great post by Ruth over at Wheelie Catholic that delivers on the kind of stuff I'm interested in. Thanks for your thoughtful post Ruth. Here's a snippit for you lazy clickers:

"Seeing disability as a disadvantage does a disservice to all of us. It denigrates the creative, resourceful solutions that people find while living in a world that is not universally designed. Such a view , unfortunately, grows things like shame, fear and despair in its garden rather than nurturing the human spirit and embracing the individuality of each of us."

You go girl! Tell 'em. These are the kind of thoughts that this blog is about. Are these the kind of things that readers are interested in? What would you like to see more of on this blog?

This week in Funny

Courtesy of the Onion from a while ago...

The Unifying Spirit of Laughter

This is old news but I had to post about it. A kid in a wheelchair was waiting around in a parking lot, when his chair got stuck in the grill of an 18-wheeler. The driver headed out on the open road without realizing he was pushing this kid around. Miraculously the wheelchair stayed stuck, even at speeds of 50 miles per hour. What a ride huh?! Luckily things turned out well and everyone was fine, so we can marvel at how terrifyingly awesome that must have been. I just couldn't help but laugh!

The Place for Pity

Through reading a bunch of the disability blogs out there, especially this one from Gordon's D Zone, I’ve come to appreciate how people with disabilities despise being given pity from the able bodied. It diminishes them and implies that, because of their tragically limited lives, they shouldn’t be expected to do anything and aren’t supposed to amount to anything.

It was with this in mind that I noticed when my grandma recently administered a dose of pity to some blind children staying in a special home. I realized of course, that there isn't anything wrong with what she's saying. It is a shame, sad, that these children won't ever be able to see. How could anyone feel otherwise?

For those that struggle with difference, loved ones around them always probably feel worse than the struggler. They think about how hard a life the person will have, how difficult the challenges will be, that life will not be easy, that the world will not accept them. The person with the difference, me for example, thinks that life is hard for everyone. Everyone has challenges. They make life worth living. I just have to adapt and not feel sorry for myself. This is my life and I have to live it. While my differences are for reasons of sexuality and a health condition, the same sentiment echoes across disability as well.

But can we blame those who pity our differences? They see themselves as normal within their culture’s mainstream. When they see others who are limited differently, they incompletely project themselves onto us. All they can imagine is how sad a life it would be if they could not see, if they could not walk, if they had to suffer discrimination. They sincerely see only pain and not the full life that is afforded to everyone regardless of limits.

From my experience as someone insecure in some of my differences, pity may be coming from a loving place, but it feels like an accusation. It affirms fears that I am damaged, not good enough, flawed, incapable, and limited. Pity feels more like a judgment and an insult. What was spoken as loving is heard as insensitive and hurtful.

It is a hard question for me to answer, but how do we bridge this gulf of emotion? Sure we could be more proud of ourselves, more confident in our strengths than focused on our weaknesses, but that’s easier said than done. How do we maintain the strength to accept pity for what it is and to educate others of how it makes us feel? Answer the question for yourself. The world needs an education.

Befriending People with Disabilities

This was a really interesting post from WHEELIE CATHOLIC. A beautiful personal story that highlights a lot of interesting issues. See my comments. How do you befriend a person with a disability without being motivated by their disability?

The Color Purple

I just saw the musical The Color Purple last weekend. It had wonderful music and an even better story. The great thing about this story (originally written as a book by Alice Walker in 1982, adapted to film in 1985, and now a musical) is how it approaches race in its storytelling and I think there’s a lesson about how disability is currently treated in society today.

The Color Purple is a powerful story because of the sweeping picture it paints of a human life in which love and struggle are recurring themes. Anyone can relate to these themes. That’s what all our lives are about. What is not emphasized but is overwhelmingly present are issues of race and sexuality. These are treated as secondary issues in the story and this is what makes it such an important work.

Race and sexuality should always be considered as secondary to humanity, as should disability. In the Color Purple, the issues of racial segregation and discrimination (something that I can’t really relate too from personal experience) were strikingly subtle. However, by marginalizing those issues, the story allowed me to become closer to the characters by relating to their purely human characteristics: fear, love, joy, and pride.

Yet at the same time, race is respected and not ignored. A somewhat secondary character, Sophia, confronts racial issues directly when she is poorly judged and mistreated because of her race. But because this fate does not befall the main character, we are somewhat emotionally shielded from the weight of her situation.

The Color Purple beautifully made me understand through is delicate subtlety how humanity is so much more important than race. I got to sit through a whole performance where I thought of the characters as complex beautiful people who I connected with. Sure they were all black, but I didn’t see it. The relationship I was able to form with the characters, allowed me to completely break through social baggage of race, even if only for a few hours.

The disability movement could use a Color Purple. It’s time to demonstrate a new subtle kind of acceptance for peoples with disabilities.

What is a disability?

We talk a lot about "disability" but what is it? It is often hard to group all “disabled” people together because their disabilities are so different, from blindness to autism to paralysis and beyond. But we still say “disability” to refer to all these things, so what do we mean?

I think that disability is generally understood by society as having restricted abilities in relation to the general population. Once a certain large percentage of people can be expected to have a certain ability, those without it are considered disabled.

What strikes me is how subjective an idea this is: that the only thing defining a segment of the population differently and separating "them" from "us" is their place on a bell curve of ability. The disabled will always be categorized in relation to everyone else.

If everyone could play tennis and then someone came along who didn’t have a racket, they would be considered less then everyone else. “Isn’t it a shame that they can’t play tennis like the rest of us? I wonder what it must be like to not have a racket?” we would say.

The same goes for non-physical abilities. If we lived in a society where language was always sung, the poor few who were tone deaf would have a pretty hard time fitting in. “It’s a pity, no one can understand him,” we would say.

Or to be more cerebral, what if we lived in a society where almost everyone was good at math. “Did you see how she forgot the quadratic equation? How embarrassing!”

And disability need not be seen as a lack of ability either, but could be seen as a difference. In Ireland, girls with red hair are still to this day are perceived negatively. What if we lived in a world where those with Red hair were treated differently from others and not given the same opportunities even though they could function just as well as their brunette counterparts? (This video gives a funny idea of what that would look like. Red heads are called Gingers in the UK.)

These examples give some context to how disability is such a fragile classification. In reality we are all given a different set of abilities at birth, both physical and mental. Slowly with age we will loose them. Disability is therefore a concept that everyone has to grasp at some point in relation to themselves. We will not always be able to do what we once did. And we will also not always be able to do the things that other people can do.

I think a lesson I see in people with disabilities is that everyone has limitations. They unfortunately have to wear their limitations on their sleeves so that everyone can see them; whereas I can pretend my limitations don’t exist or can easily hide them. So to do away with the word disability, we could all say that limitations suck, whatever they are. That’s something we all have in common.

How to Advocate for Change?

My last post brought up the issue of how to best advocate for peoples with disabilities; by defining them as a separate group to raise awareness and advocate for equality, or to consider them de facto as equal to others and not use divisive language in referring to them.

This issue came to mind when I read about a Supreme Court Decision a few weeks ago concerning race and segregation. At issue was the Louisville School District’s decision to achieve equal amounts of white and black students in each school by bussing kids around town depending on if they were white or black. The court ruled against this action arguing that the city should be color blind by not using race as a deciding factor in decision about school placement. A good article that is now only partially available on the subject was in the New York Times on July 1st. The abstract states:

“Since 1954, liberal and conservative justices have disagreed about the central meaning of Brown v. Board of Education. Was the purpose of Brown to achieve a colorblind society or an integrated one?”

Without directly comparing issues of race and those of disability, I think the issue raised in the article can also apply in relation to disability. As is usually the case with two valid positions on either side of an argument, the solution lies somewhere in the middle. For both race and disability, I believe that in order to establish and demonstrate the injustices being done to a group, that group must be distinguished from others so that others can see the wrong-doing. However, when this position is applied too heavily, as I believe it was in the case of Louisville School District, sight of the goal can be lost.

Don’t we ultimately we want a society where neither race nor disability (nor gender nor sexuality) are factors in the way we are treated? We are all people and in the most profound sense, we are all the same. However, it would be a lie and a tragedy to deny that we have differences that make us interesting and wonderful people. The line must be carefully navigated to ensure that advocacy does not divide more than it unites.

Us vs Them

Hello and welcome to my blog! This is my first post so I'll make it controversial. I want to know how these thoughts resonate with the disability community.

There has been a lot of blogging about the Disability Blog Carnival #18 and I wanted to offer another perspective. The emphasis in this post is:
The Disabled! We’re just like YOU!!!!.
I couldn't agree more with the sentiment, but to rain on the carnival a little (do carnivals have parades?) I thought I'd mention that the way to really convince able bodied people that "We're just like you" is to stop emphasizing the two sides "we" and "you" because it by definition defines you as something different. This is an ideal of course, because the world certainly does need some help in understanding the lives of peoples with disabilities. So where should the line be between separating out the disability community as different for the sake of advocacy and integrating them into the rest of society to create the very thing they're advocating for? I think that the Disability Blog Carnival is ridding on the right side of the fence but what do you think?